i remember wondering how much of camryn's journey wyatt was really soaking in. i mean he was just a newborn baby through her first transplant and then just 2 1/2 through her second. tonight, i realized he soaked it all in....
camryn's sick, she has a flu bug...she's got a bit of a fever and is having an upset stomach which has led to her throwing up a couple times. tonight while camryn was feeling horrible, wyatt ran to his room and started crying. jason went to get him and through the tears streaming down his face he said, "i hate when camryn is sick".
we talked him through it and he admitted that he gets scared, so scared that she'll be taken to the hospital and she will be gone a long time. as he said, "i'll miss my sissy".
sissy...
i've never heard him call camryn sissy before, but i know it's his term of endearment. his sissy cannot be sick, she just can't because in his mind the snowball starts rolling and there's no turning back.
he recovered and is okay now, but for a moment through his tears i cried my own. it is rare that wyatt shows the depth of his feelings of camryn being sick, but tonight when it showed itself it hurt so much. because it is the unintended consequence. this is not meant to be...his little heart does not need to carry this weight but it does.
i am hopeful a time will come when camryn being sick is just camryn being sick...there's no other feeling of is this it? is the shoe going to drop? is she really okay?
i mean it is an odd reality to find comfort in the fact that other kids in her class are battling the flu, "passing it around" as camryn's teacher put it. odd isn't it? i find solace in other children's illnesses. weird that i breath better knowing she isn't the only one.
but, to a little boy i wonder if there will ever be a day that he won't worry about his sissy. quite honestly the person who means the most to him in the entire world...
praying for his little heart and for camryn that whatever she is battling she fights off, just like she's done time and time before.
Tuesday, February 26, 2013
Sunday, February 17, 2013
it's that month...
yep, it's that month...
the month over the past seven years has held some of the hardest moments of my life...
* seven years ago leukemia reared its ugly head and wrecked havoc on our lives.
* five years ago my dad struggled with his heart and was diagnosed with congestive heart failure.
* four years ago relapse became a reality and another bone marrow transplant loomed
* three years ago i lost one of the greatest woman i've ever known, my aunt frankie.
it's a rough month on my heart...
and yet, this morning in worship i was reminded...
the month over the past seven years has held some of the hardest moments of my life...
* seven years ago leukemia reared its ugly head and wrecked havoc on our lives.
* five years ago my dad struggled with his heart and was diagnosed with congestive heart failure.
* four years ago relapse became a reality and another bone marrow transplant loomed
* three years ago i lost one of the greatest woman i've ever known, my aunt frankie.
it's a rough month on my heart...
and yet, this morning in worship i was reminded...
you are stronger
you are stronger
sin is broken
you have saved me
it is written
Christ is risen
Jesus you are Lord of all
and today i will rest...rest in my Savior who is stronger.
Wednesday, February 6, 2013
{seven years}
the words seem to be escaping me...i had in my mind thought about this post for a while, as i use this blog to mark time for myself (and fill the few readers left in with some of our life).
it's been seven years tomorrow. seven years since our world came crashing down around us. seven years since i felt kicked in the stomach so hard, that it left a knot. a permanent knot that even to this day, oh heck even in this moment i still feel. the word leukemia became part of our vocabulary...i hate that word.
i can still vividly remember saying bye to my friend t as i left work to take camryn to the doctor. i left my desk in disarray, no sub plans on my desk, no what if it's more than just an easy fix...i'd be back tomorrow and all would be well. but, it wasn't.
sometimes i'd like to go back to that person i was...the person who didn't know this pain, who didn't know these realities, the person who viewed life through such different eyes. but, i can't.
so much has changed in seven years...so.much.
i'm not the same person i was. jason is not the same. camryn is not the same. the only person who might be unscathed is wyatt, but let's be honest his world has been shattered before too. so, we're all in process...we're all living our lives daily in His hands. we're not perfect, we don't have this whole parent of a child with cancer thing figured out. not even sure you can.
the other day i cried and cried with jason and it all came rushing back. the anger that some things are so dang hard for camryn. the hurt that there are things that cannot be repaired or replaced. just the sadness of it all.
but, then there's camryn.
of all the hurt i've felt magnify it a million times over and maybe, just maybe that would be a glimpse of what her heart feels. i'm wrestling with the reality that camryn knows...she knows that her life is different. she knows that there is a different reality to her. she knows the journey. and she knows the fear.
but, the best part...
it does not change who she is. she is the best 8 year old around. she is talented, smart, funny, compassionate, loving, and just the best thing ever. my heart cannot contain the love that i feel for her. she teaches me daily what it means to live life to the fullest, and live life loving Jesus every step of the way.
she teaches me.
and really that is the best gift of the past seven years. that camryn is here, she is here teaching her momma's heart how to love God more, how to trust Him more, how to live by faith more.
how to be more.
how to take the garbage and the beauty of the last seven years and make it more than that. handing it over to hands bigger than mine to mold it, shape it, and redeem it.
oh there will be tears of joy and sadness...but, either way it's a life lived day by day in His hands...holding on to hers.
we love you camryn lee and are ever so thankful that you're here...continually telling the story that Jesus is greater, and He is good.
and i leave you with this...a song by chris tomlin on his new album burning lights.
it's been seven years tomorrow. seven years since our world came crashing down around us. seven years since i felt kicked in the stomach so hard, that it left a knot. a permanent knot that even to this day, oh heck even in this moment i still feel. the word leukemia became part of our vocabulary...i hate that word.
i can still vividly remember saying bye to my friend t as i left work to take camryn to the doctor. i left my desk in disarray, no sub plans on my desk, no what if it's more than just an easy fix...i'd be back tomorrow and all would be well. but, it wasn't.
sometimes i'd like to go back to that person i was...the person who didn't know this pain, who didn't know these realities, the person who viewed life through such different eyes. but, i can't.
so much has changed in seven years...so.much.
i'm not the same person i was. jason is not the same. camryn is not the same. the only person who might be unscathed is wyatt, but let's be honest his world has been shattered before too. so, we're all in process...we're all living our lives daily in His hands. we're not perfect, we don't have this whole parent of a child with cancer thing figured out. not even sure you can.
the other day i cried and cried with jason and it all came rushing back. the anger that some things are so dang hard for camryn. the hurt that there are things that cannot be repaired or replaced. just the sadness of it all.
but, then there's camryn.
of all the hurt i've felt magnify it a million times over and maybe, just maybe that would be a glimpse of what her heart feels. i'm wrestling with the reality that camryn knows...she knows that her life is different. she knows that there is a different reality to her. she knows the journey. and she knows the fear.
but, the best part...
it does not change who she is. she is the best 8 year old around. she is talented, smart, funny, compassionate, loving, and just the best thing ever. my heart cannot contain the love that i feel for her. she teaches me daily what it means to live life to the fullest, and live life loving Jesus every step of the way.
she teaches me.
and really that is the best gift of the past seven years. that camryn is here, she is here teaching her momma's heart how to love God more, how to trust Him more, how to live by faith more.
how to be more.
how to take the garbage and the beauty of the last seven years and make it more than that. handing it over to hands bigger than mine to mold it, shape it, and redeem it.
oh there will be tears of joy and sadness...but, either way it's a life lived day by day in His hands...holding on to hers.
we love you camryn lee and are ever so thankful that you're here...continually telling the story that Jesus is greater, and He is good.
and i leave you with this...a song by chris tomlin on his new album burning lights.
Sovereign
Sovereign in the mountain air
Sovereign on the ocean floor
With me in the calm
With me in the storm
Sovereign in my greatest joy
In my deepest cry
With me in the dark
With me at the dawn
In your everlasting arm
All the pieces of my life
From beginning to the end
I can trust you
In your never failing love
You work everything for good
God whatever comes my way
I will trust you
Sovereign in the mountain
Sovereign on the ocean floor
With me in the calm
With me in the storm
Sovereign in my greatest joy
Sovereign in my deepest cry
With me in the dark
With me at the dawn
In your everlasting arms
All the pieces of my life
From beginning to the end
I can trust you
In your never failing love
You work everything for good
God whatever comes my way
I will trust you
God whatever comes my way
I will trust you
All my hopes
All I need
Held in your hands
All my life
All of me
Held in your hands
All my fears
All my dreams
Held in your hands
All my hopes
All I need
Held in your hands
All my life
All of me
Held in your hands
All my fears
All my dreams
Held in your hands
In your everlasting arms
All the pieces of my life
From beginning to the end
I can trust you
In your never failing love
You work everything for good
God whatever comes my way
I will trust you
God whatever comes my way
I will trust you
God whatever comes my way
I will trust you
Sovereign on the ocean floor
With me in the calm
With me in the storm
Sovereign in my greatest joy
In my deepest cry
With me in the dark
With me at the dawn
In your everlasting arm
All the pieces of my life
From beginning to the end
I can trust you
In your never failing love
You work everything for good
God whatever comes my way
I will trust you
Sovereign in the mountain
Sovereign on the ocean floor
With me in the calm
With me in the storm
Sovereign in my greatest joy
Sovereign in my deepest cry
With me in the dark
With me at the dawn
In your everlasting arms
All the pieces of my life
From beginning to the end
I can trust you
In your never failing love
You work everything for good
God whatever comes my way
I will trust you
God whatever comes my way
I will trust you
All my hopes
All I need
Held in your hands
All my life
All of me
Held in your hands
All my fears
All my dreams
Held in your hands
All my hopes
All I need
Held in your hands
All my life
All of me
Held in your hands
All my fears
All my dreams
Held in your hands
In your everlasting arms
All the pieces of my life
From beginning to the end
I can trust you
In your never failing love
You work everything for good
God whatever comes my way
I will trust you
God whatever comes my way
I will trust you
God whatever comes my way
I will trust you
Saturday, December 22, 2012
simply glorious...
some days in the hustle and bustle that is life...well, i don't think it really is life. i think rather it is what we've made of life. the race if you will...the never-ending race for (insert whatever you'd like here). but, nonetheless we race. we hustle, we bustle about in hopes of achieving, finishing, and feeling a sense of success.
i'd like to step back...i'd love to be able to just let go.
let go.
the pressing need to have my children be perfect (or so gosh darn close). the pressing need to be the perfect wife, to do all and be all. the pressing need to be a perfect teacher, one who teaches the in's and out's of u.s. history well. the pressing need to be a perfect dean of students. a perfect master's degree student. the list could go on and on.
let.it.go.
recently, i've been drawn to the simplicity of the christmas story. the simple. oh don't get me wrong it is a glorious story, but it is simply glorious!
look at mary. look at joseph. look at the stable. look...
and be amazed. that the hustle and bustle of the word missed the long expected savior. they longed for him, they needed him, but he came not in the ways that met their expectations. therefore, they missed him.
look at the shepherds.
look at the star.
look at the simply glorious.
that our savior came, not in the pomp and circumstance of our world. not to be noticed. not to draw attention to himself. but, rather to love us.
love us.
and that is just simply glorious.
so, i need to bask in that glory. not the glory of perfection and being the best. but in the glory of a savior babe, who loved me then and loves me still.
let go of all that we long for, the race we run. and sit, watch, expect the savior to come...and when he does it will be simply glorious.
i'd like to step back...i'd love to be able to just let go.
let go.
the pressing need to have my children be perfect (or so gosh darn close). the pressing need to be the perfect wife, to do all and be all. the pressing need to be a perfect teacher, one who teaches the in's and out's of u.s. history well. the pressing need to be a perfect dean of students. a perfect master's degree student. the list could go on and on.
let.it.go.
recently, i've been drawn to the simplicity of the christmas story. the simple. oh don't get me wrong it is a glorious story, but it is simply glorious!
look at mary. look at joseph. look at the stable. look...
and be amazed. that the hustle and bustle of the word missed the long expected savior. they longed for him, they needed him, but he came not in the ways that met their expectations. therefore, they missed him.
look at the shepherds.
look at the star.
look at the simply glorious.
that our savior came, not in the pomp and circumstance of our world. not to be noticed. not to draw attention to himself. but, rather to love us.
love us.
and that is just simply glorious.
so, i need to bask in that glory. not the glory of perfection and being the best. but in the glory of a savior babe, who loved me then and loves me still.
let go of all that we long for, the race we run. and sit, watch, expect the savior to come...and when he does it will be simply glorious.
Sunday, December 9, 2012
silver linings...
even in the midst of situations where all i want to do is sigh heavily, look at the sky, and ask "why?" the lord provides...yes, he provides the silver linings.
the good of camryn's bout with impetigo is that her body can fight this. her body responded so well to the antibiotics, it fought and it won! in the world of bone marrow transplants and new immune systems this is HUGE!
so that's our silver lining...
yes, we hate that camryn fights things. but really her fight indicates that she is winning the war!
and i don't have to tell you we want the war won. forever.
it was a long hard week. as my friend k said to me, "i'm sure whenever camryn gets sick it brings everything back." and it does...maybe not all of it, but enough of it.
and when she wins a battle...it's another victory for wyatt's marrow and another tally mark for life.
life. yes, we are thankful for the silver linings...
the good of camryn's bout with impetigo is that her body can fight this. her body responded so well to the antibiotics, it fought and it won! in the world of bone marrow transplants and new immune systems this is HUGE!
so that's our silver lining...
yes, we hate that camryn fights things. but really her fight indicates that she is winning the war!
and i don't have to tell you we want the war won. forever.
it was a long hard week. as my friend k said to me, "i'm sure whenever camryn gets sick it brings everything back." and it does...maybe not all of it, but enough of it.
and when she wins a battle...it's another victory for wyatt's marrow and another tally mark for life.
life. yes, we are thankful for the silver linings...
Thursday, December 6, 2012
well...
i had thought we'd just have a simple sinus infection...but, nope!
camryn stayed home from school monday, because my super smart mother-in-law said that camryn's rash might be impetigo. and if it was impetigo it is super contagious, so we decided to be safe rather than infect her entire class. we called ucla and they said if it gets worse go to urgent care, if not they'd see her on tuesday.
well, monday morning wyatt woke up feeling lousy...he was crying, complaining that his stomach hurt, his throat. now, i will be honest we didn't know whether or not it was real or just sympathy pains since camryn was staying home. but, he didn't seem himself so we opted to let him stay home and he'd have a day to kick whatever it was.
well, when i got home monday he was even worse and running an 101 temp. so, it was real. he was complaining about everything, camryn was complaining too...all around monday night was not fun. and worst of all i was starting to feel horrible.
i woke up tuesday and felt awful, i braved work while jason took camryn to ucla, and wyatt stayed home with my parents. i made it through to 9:30 and by then it was a full-blown i'm sick and it feels like strep throat...great! i called wyatt's doctor as he wasn't any better and tuesday morning i had looked at his tonsils and they were HUGE...they said bring him in asap and so i left work, got wyatt, and headed to dr.k's office. all the while jason was navigating ucla with camryn.
once camryn got to ucla one look from dr.m and it was confirmed she had impetigo. he was very concerned as it appeared to be approaching her eye and if it did that would be very problematic, even leading to vision loss. dr.m had even thought of maybe admitting camryn for iv antibiotics it was so bad...honestly, when does this girl get a break. he did not admit her, but prescribed two high powered antibiotics, and said he would see her again on friday. (so much for 3 trips to ucla, now it's 4 and probably more) he said if it gets any worse can immediately and of course in our world that means an ER visit and admittance. wonderful.
meanwhile, dr.k confirmed that wyatt had strep throat and also peeked at my throat...yep, we were strep throat victims. she prescribed wyatt antibiotics and told me to call my doctor for some as well. my doctor being great called in a prescription for me so we'd have a grand total of 4 antibiotics waiting for us at cvs. awesome.
i called jason and got the update and gave him our update...he decided to take the rest of the day off. really, 3 out of the 4 of us were sick and it was just a lousy day. he told me to meet him at cvs and then he'd get mine, wyatt's, and camryn's medicine and i could go home with wyatt and camryn. when we got home wyatt and i got in bed and camryn who really isn't feeling sick played and played.
well, wyatt went to school today and camryn and i have been home. i am going back tomorrow and camryn, well we'll see...dr.m said no school through friday, but she is hoping she can go tomorrow afternoon as it is grandparents day and she wants to go so badly! i'm hoping he will be gracious and grant her wish...after all he truly does love this little girl.
so, that's been our week. jealous? honestly, i haven't been this sick in a long time...and really 3 of us has proven that jason has a heart of gold. poor guy...hoping we are better soon, so he doesn't have to take care of everything. and really hoping he doesn't get sick either.
hopeful you and yours are staying healthy this holiday season!
camryn stayed home from school monday, because my super smart mother-in-law said that camryn's rash might be impetigo. and if it was impetigo it is super contagious, so we decided to be safe rather than infect her entire class. we called ucla and they said if it gets worse go to urgent care, if not they'd see her on tuesday.
well, monday morning wyatt woke up feeling lousy...he was crying, complaining that his stomach hurt, his throat. now, i will be honest we didn't know whether or not it was real or just sympathy pains since camryn was staying home. but, he didn't seem himself so we opted to let him stay home and he'd have a day to kick whatever it was.
well, when i got home monday he was even worse and running an 101 temp. so, it was real. he was complaining about everything, camryn was complaining too...all around monday night was not fun. and worst of all i was starting to feel horrible.
i woke up tuesday and felt awful, i braved work while jason took camryn to ucla, and wyatt stayed home with my parents. i made it through to 9:30 and by then it was a full-blown i'm sick and it feels like strep throat...great! i called wyatt's doctor as he wasn't any better and tuesday morning i had looked at his tonsils and they were HUGE...they said bring him in asap and so i left work, got wyatt, and headed to dr.k's office. all the while jason was navigating ucla with camryn.
once camryn got to ucla one look from dr.m and it was confirmed she had impetigo. he was very concerned as it appeared to be approaching her eye and if it did that would be very problematic, even leading to vision loss. dr.m had even thought of maybe admitting camryn for iv antibiotics it was so bad...honestly, when does this girl get a break. he did not admit her, but prescribed two high powered antibiotics, and said he would see her again on friday. (so much for 3 trips to ucla, now it's 4 and probably more) he said if it gets any worse can immediately and of course in our world that means an ER visit and admittance. wonderful.
meanwhile, dr.k confirmed that wyatt had strep throat and also peeked at my throat...yep, we were strep throat victims. she prescribed wyatt antibiotics and told me to call my doctor for some as well. my doctor being great called in a prescription for me so we'd have a grand total of 4 antibiotics waiting for us at cvs. awesome.
i called jason and got the update and gave him our update...he decided to take the rest of the day off. really, 3 out of the 4 of us were sick and it was just a lousy day. he told me to meet him at cvs and then he'd get mine, wyatt's, and camryn's medicine and i could go home with wyatt and camryn. when we got home wyatt and i got in bed and camryn who really isn't feeling sick played and played.
well, wyatt went to school today and camryn and i have been home. i am going back tomorrow and camryn, well we'll see...dr.m said no school through friday, but she is hoping she can go tomorrow afternoon as it is grandparents day and she wants to go so badly! i'm hoping he will be gracious and grant her wish...after all he truly does love this little girl.
so, that's been our week. jealous? honestly, i haven't been this sick in a long time...and really 3 of us has proven that jason has a heart of gold. poor guy...hoping we are better soon, so he doesn't have to take care of everything. and really hoping he doesn't get sick either.
hopeful you and yours are staying healthy this holiday season!
Sunday, December 2, 2012
once a year...
about once a year camryn fights a sinus infection. and poor girl this year's infection is just wrecking havoc on her skin...who'd thought? her skin is just raw from blowing her nose over and over, it's chapped, and it has developed open sores. ugh...poor girl, she's just hatin' life and she's embarrassed. my heart hurts for her...because sometimes i wonder when enough is enough.
camryn gets very sensitive about certain things and i don't blame her. after all, you don't go through all that she has and not developed some insecurities. but, honestly today i feel bad...just sad.
once in a while it all creeps in on me about camryn...yes, she is doing fantastic. yes, she is thriving. but...
there's always a sense that some of these issues she faces daily are cancer's fault. and they are. no body can withstand it all. no one. there are side effects during treatment, but i think the lasting effects are what you don't expect. you fight so hard to survive that you really don't consider what does this mean long term?
today is one of those days...the long term is battling me. i hate that her rash looks awful. i hate that her poor little face has red rash and chapped skin. i hate that she cries because she is embarrassed. i hate that this is all because of a stupid disease.
and the worst part...
the disease lurks. right now my heart aches for friends of ours who have battled melanoma for over a year. they are great people, sweet people, two little kids...who have lots of life left to live. and yet this stupid disease wreaks havoc on their lives. i don't like it. not.one.bit.
tuesday camryn heads down to clinic to see her usual doctors, haven't seen them since august. it'll be nice to hear how she is doing, i sure hope her face looks better and she feels a bit better about it all. dr.m will be in and i'm sure she'll get to see her most favorite doctor. that will be a blessing. i'm hopeful that maybe they'll stretch out her appointments even further and we'll begin to start the transition to survivor clinic. that is just unbelievable to me.
the next week we see dr.s at the dermatology clinic.
and then the next week we'll see another dr.s in the immunology clinic to see how cam's immune system is doing.
nothing like 3 trips to ucla in one month! oh well. thankful we've had some time off!
so once a year when camryn fights a cold/sinus infection like normal kids my heart feels it. it's never easy to watch your child be sick, but once you've fought for their very life it really causes a bit of your heart to just ache.
camryn gets very sensitive about certain things and i don't blame her. after all, you don't go through all that she has and not developed some insecurities. but, honestly today i feel bad...just sad.
once in a while it all creeps in on me about camryn...yes, she is doing fantastic. yes, she is thriving. but...
there's always a sense that some of these issues she faces daily are cancer's fault. and they are. no body can withstand it all. no one. there are side effects during treatment, but i think the lasting effects are what you don't expect. you fight so hard to survive that you really don't consider what does this mean long term?
today is one of those days...the long term is battling me. i hate that her rash looks awful. i hate that her poor little face has red rash and chapped skin. i hate that she cries because she is embarrassed. i hate that this is all because of a stupid disease.
and the worst part...
the disease lurks. right now my heart aches for friends of ours who have battled melanoma for over a year. they are great people, sweet people, two little kids...who have lots of life left to live. and yet this stupid disease wreaks havoc on their lives. i don't like it. not.one.bit.
tuesday camryn heads down to clinic to see her usual doctors, haven't seen them since august. it'll be nice to hear how she is doing, i sure hope her face looks better and she feels a bit better about it all. dr.m will be in and i'm sure she'll get to see her most favorite doctor. that will be a blessing. i'm hopeful that maybe they'll stretch out her appointments even further and we'll begin to start the transition to survivor clinic. that is just unbelievable to me.
the next week we see dr.s at the dermatology clinic.
and then the next week we'll see another dr.s in the immunology clinic to see how cam's immune system is doing.
nothing like 3 trips to ucla in one month! oh well. thankful we've had some time off!
so once a year when camryn fights a cold/sinus infection like normal kids my heart feels it. it's never easy to watch your child be sick, but once you've fought for their very life it really causes a bit of your heart to just ache.
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